Thalidomide survivor Trish Jackson has for decades been calling for a national apology – and now she is about to receive one.
Ms Jackson has learnt since birth to do everything, from peeling potatoes to painting portraits, with her feet.
Her body was irreparably damaged by thalidomide, a drug behind a global pharmaceutical disaster.
The words that Ms Jackson has been longing to hear are due to arrive next month.
“I don’t know how I feel really,” she says.
“We fought for this for so long.”
Billed a ‘wonder drug’, thalidomide was sold to pregnant women to treat morning sickness in the late 1950s and early `60s.
The drug was found to cause birth defects as late as 1961 – but the federal government failed to recall thalidomide-containing medicines from pharmacies even after the side-effects became known.
Prime Minister Anthony Albanese has invited thalidomide survivors and their families to Canberra on 29 November to say sorry.
The national apology will be followed by a dedication ceremony that will unveil a monument at Kings Park in Canberra to recognise thalidomide survivors and their families.
It may not seem like much, but Ms Jackson hopes it will mark the beginning of a ‘national remembering’ of a drug that damaged her body — and the bodies of more than 10,000 children worldwide.
Drug that ‘keeps on giving’
Thalidomide caused severe harm to Ms Jackson while in utero, as well as tremendous pain throughout her life.
But despite her pain, Ms Jackson has thrived.
She finished school, worked in administration, health and even in a pharmacy, ran a household, and raised a “beautiful” daughter alongside her husband Trevor.
She can peel potatoes with her feet, cook a roast, and is an artist who uses acrylics and watercolours to paint the beauty around her — from landscapes and flower arrangements to portraits.
“There’s more than one time that I’ve got a mouth full of paint as I try to get the lid off [the tube],” she says with a laugh.
She says her pursuit for independence began young, recalling a childhood accident that involved an attempt to solicit an ice cream from the freezer.
“I had to get a chair to stand on and reached for the ice block with my mouth, and my tongue got stuck to the bottom of the freezer,” she says.
“[Mum] wasn’t too impressed.”
But decades of contorting her body to do simple actions such as picking up a phone, completing a jigsaw, or turning on a tap have taken a toll on her body.
“It didn’t just affect the arms and legs. There’s a lot of internal damage,” she says.
“[And] our bodies are just wrecked, I guess, from the way we move.”
Thalidomide, which was first sold internationally in 1957, affected babies in different ways, often depending on the stage of pregnancy when their mother took the pill.
Arms, legs, eyes and ears could all be affected, as well as “invisible” internal complications to kidneys, lungs, or hearts.
“It also killed our nerve endings,” Ms Jackson says.
“I can get cold in a minute, I can get hot in a minute, I can be sweating.
“Touching my arm one day will be fine, the next day it’ll be like a knife going through my body.”
Thalidomide survivors’ veins are thinner than most people’s, making it difficult to get blood for blood tests.
Exhaustion is a constant battle.
After speaking at a function on Saturday, Ms Jackson had to recover in bed all day Sunday. Most days her energy will ‘peter out'”‘ by lunchtime.
“Pain levels were through the roof,” she says.
‘What a sad, sad day’
Thalidomide was also tough for Ms Jackson’s family.
“My grandma, who I absolutely loved and I was very close to, would ring me on every birthday, and she would say, ‘Happy birthday Trish’, happy 15th, or 12th, or 11th.”
“And then she’d go, ‘What a sad, sad, day it was.'”
Thalidomide-containing medicines were withdrawn from sale in Australia in November 1961 by distributor Distillers after a series of independent publications highlighted links between thalidomide and birth defects.
The Commonwealth Health Department received notice of the withdrawal at the time, but did not alert the public for at least eight months, nor did it search and destroy remaining stock.
It wasn’t until 1962 that the Commonwealth systematically banned thalidomide-containing imports.
Even in the aftermath, Ms Jackson says medical advice was lacking.
“[The government] told [my mum] that she should take me to the repatriation hospital and have my little arms surgically removed,” she says.
“And they could stick steel rods in my shoulders so they could hang false arms off them, so I would look normal.”
Ms Jackson’s parents will be “too frail” to attend the national apology in Canberra next month.
“They’re both 96. They both would love to be there,” Ms Jackson says.
“Mum said it’s a little bit late. I think she needs to hear it, but it’s going to be really sad, I think.”
Remembering the past
Ms Jackson hopes a formal apology will serve as a powerful reminder for decision-makers – a reminder that they have “real people’s lives in their hands” as they develop policies.
She also hopes the thalidomide tragedy will never be forgotten.
It is partly why she, alongside many other thalidomide survivors, has worked hard to educate others about what it is like living with thalidomide.
“I used to explain to kids that me wearing shoes would be like you wearing boxing gloves on your hands all the time,” she says.
But Ms Jackson says she is surprised to see so many people still unaware of the impacts of thalidomide, including some doctors and medical practitioners who have “never been taught”.
“It’s amazing how many doctors I’ve been to and they go, ‘What’s wrong with you?’,” she says.
“It just blows my mind that they’re not taught about it. They don’t really know how it affected us.”
The ABC surveyed some of the medicine programs at Australia’s top-performing universities and found all programs teach on thalidomide.
But the extent ranges from discussing its history to using it as an exemplar to illustrate the importance of research ethics, “rigorous” drug approval processes, and “risk assessment of prescribing in pregnancy”.
Few programs discuss how thalidomide specifically affects limb or organ development in embryos, as well as the long-term impacts for those who have survived thalidomide.
Even now, Trish Jackson says it is difficult to go outside without feeling the stares from strangers or hearing whispers from those passing by.
Ms Jackson remembers a conversation she had with a woman while shopping in an affluent city suburb with her six-month-old daughter.
“I was just rocking the pram with my foot [and] this lady came and sat behind me, and she looked into the pram,” she says.
“And she said, ‘Oh my goodness, what a beautiful baby’.”
Ms Jackson remembers the exchange being mostly positive – “my head was swelling”, she says – but it ended on a sour note she will never forget.
“[The woman] said, ‘I’m really glad you’ve got a baby.’ And I said, ‘I’m really stoked I’ve got a baby too.'”
“And she said, ‘No darling, I’m really glad you have a baby because at least now you have a reason to live.'”
Forging the future
Moving forward, Ms Jackson says the challenge is to ask the government to revise what is otherwise an “amazing” healthcare package but is “really, really hard” to access for disabled people.
She says both funding programs offered under the Australian Thalidomide Survivors Support Program, announced in 2020, require her to take forms to her doctors to sign.
“It’s really hard carrying pieces of paper when you’ve got no arms,” she says.
“One time I went to my heart doctor and I forgot to take my piece of form, so the government wouldn’t reimburse my costs.”
Ms Jackson says she was told to return to her cardiac surgeon and ask him to sign it, but she says he’s got “better things to do than running around signing a piece of paper”.
“It’s hard. They could have made it a lot easier for us,” she says.
Do you remember the thalidomide disaster? Are you amazed at the dexterity and fortitude of the survivors? Share your thoughts in the comments section below.
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